ELI'S HEART, a Musical Love Story

Eli’s Imperfect Heart

In Eli's Heart, my character Eli Levin suffers from a frightening congenital heart condition, Tetralogy of Fallot. Eli’s story takes place in the middle of the twentieth century, when a surgical procedure had only recently been developed to offer some hope to these children, known as “blue babies” because of the oxygen deprivation they experienced.

Eli has two burdens: he is also a prodigiously gifted pianist. He lets neither of these define him. Eli chooses to become an accompanist, or a collaborating artist. He refuses to give in to his heart. Instead, he gives it to music, and to the girl he loves with all his heart, Kristina Porter – who eventually becomes his wife.

When they first meet as teenagers, Eli is aware his life will probably be a very short one. Eventually, a second surgery is perfected which gives T.O.F. patients a good chance at a longer and more “normal” life. Medical science has yet to find a way to make the hearts of these courageous people “normal” even now; and often, medication and more surgery is required.

At this point in the book, Eli is aware of the option for the second surgery, and knows he will have to have the procedure soon. As I learned while researching the book, T.O.F. patients seem to share a great love of life, a desire to achieve all they can despite the odds. They never take their hearts for granted, but most do not let the condition rule their lives. Yet I’m sure they all struggle with their heightened sense of mortality. Eli certainly does.

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Sometimes during a break while he was practicing by himself, Eli would feel a sudden chill. He was about to turn twenty-seven. In three years he’d be thirty. He remembered he had told Krissy when he first met her he wasn’t expected to live past thirty, and he was sure she recalled it as well.

When Eli had these moments of fear, Krissy was very much aware of it. He would grow very quiet and reach for her urgently. There was desperation in his lovemaking, a sense that he was afraid he could be making love to her for the last time.

She talked to him about it, stroking his head, his shoulders, his chest. “I think I have an idea what you’re feeling,” she said softly. “I feel it too, sometimes. But Eli, what Les Allen said to me before we were reunited is such a help to me. I know I can’t really understand how you feel, my dearest, sweetest boy. But he told me to focus on life, and not to live or love in fear. Sometimes that has to be hard for you. Sometimes it’s hard for me.” He was quiet but moved as close to her as he could.

“I know you’ve said you don’t think the power in the universe ... what I’ve come to think of as the Eternal ... intervenes in our lives. And you could be right. But I do wonder if we are given a path to walk in this life for a reason. I don’t think you even know what an inspiration you’ve been not just to me, but to many people who know you.”

“Why do you say that? I haven’t done anything ... well, I try to share my love of music when I play. I’m sure there are people who don’t like me very much. You know what an opinionated musical snob I am.”

She laughed softly. “Yes, you are a musical snob. You wouldn’t be my Eli if you weren’t. But people who know you, and know what you’ve been dealing with all your life, admire your love of life, your incredible courage, your artistry.”

They moved even closer to each other, wanting to feel nothing could ever come between them. He said softly, “Having you in my life has meant the world to me, my love. If your universal being ... the Eternal ... did plan a path for me, I’m so thankful it included you.” He was quiet for a moment. “I hope I have more time. I think there are more things I’m supposed to do while I’m here.”

For a few minutes, it seemed to them their hearts were beating almost as one. It was a lovely moment, and they drifted off to sleep filled with a sense of peace.

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ELI’S HEART, Kindle edition can be purchased at

http://tinyurl.com/huwo8f7

 Cover by Tristan Flanagan

The Inspiration for ELI'S HEART

THE INSPIRATION FOR ELI’S HEART

Eli’s Heart was inspired by a friendship I had decades ago with a brilliant teenage pianist born with a defective heart. Samuel Sanders was fifteen when I first met him and heard him play. He was visiting a sister who lived in my hometown and he came to my house several times, and we listened to recordings of orchestral music, played piano duets (which was definitely daunting for me!), talked about books and baseball. His activities were restricted because of his congenital heart defect.

Tetralogy of Fallot, the heart condition my character Eli Levin lives with, is a complicated and frightening disease which is present at birth. Physicians have been aware of it for centuries. According to Wikipedia, “It was described in 1672 by Niels Stensen, in 1773 by Edward Sandifort, and in 1888 by the French physician Étienne-Louis Arthur Fallot, after whom it is named.”

With a lot of help from Dr. Aarti Asnani, a cardiologist with Massachusetts General Hospital in Boston, I finally developed a grasp of the condition. There are four separate defects of the heart: a hole between the lower chambers (ventricles) of the heart, which means unoxygenated blood is mixing with oxygenated blood; a narrowing of the valve between the right ventricle and the lungs, which means not enough blood is getting to the lungs to be replenished with oxygen; a thickening of the wall of the right ventricle; and an aorta which is misplaced and is drawing blood from both ventricles. The result is a considerable reduction in the amount of oxygenated blood distributed to the body. The average person receives between 90 and 95% oxygenated blood. TOF patients receive sometimes less than 50%. Breathing is a struggle. Any physical activity, even walking, becomes difficult and can be life-threatening. Many children died in infancy, or did not survive puberty. Cyanosis (blue coloring of the skin, especially fingers, toes and lips) is a primary symptom.

In 1944, Drs. Alfred Blalock and Helen Taussig, with considerable help from Blalock’s assistant Vivien Thomas, developed a procedure to alleviate these children’s suffering. A shunt was created by attaching a branch of the aorta to the pulmonary artery which increased the flow of oxygenated blood. Sometimes this increase was dramatic; sometimes enough to at least ease their symptoms. From my understanding, patients who survived the procedure lived more normal and longer lives. However, the heart was not repaired. The Blalock-Taussig procedure was considered “palliative”—it eased the worst of the symptoms, but all four defects of the heart were still there.

About ten years later an open-heart surgery (called the “total correction” or “total repair”) was performed which patched the hole between the ventricles and widened the opening to the lungs, giving the patients a chance at a better quality – and quantity – of life. Over the past decades, as TOF patients have lived longer (some into their seventies and even eighties) other surgical procedures have been developed and refined, and a range of medications also exists to help treat the condition. It was at first considered a congenital heart defect. It is presently considered a congenital heart disease, a life-long struggle with a heart which can never be made “normal.” From my understanding, there is no one “standard” procedure for these patients. One comment from Dr. Asnani in our extensive correspondence stands out in my mind:

“With regard to treatment options for (adult) TOF patients, it’s definitely not a straightforward decision to pursue surgery, so we will often try to manage with medications for as long as possible.  Newer technologies like cardiac MRI are helping us figure out when the heart dysfunction is progressing to the point where heart surgery is absolutely necessary to prevent a further decline, though we’re still wrestling with defining the exact timeline.”

One of the first things Samuel Sanders told me was that he didn’t expect to live past the age of thirty. Other than that, and telling me about the cyanosis and that he’d had surgery, he didn’t discuss his condition and I didn’t ask questions. We concentrated on enjoying the time we had together.

After hearing him play – brilliantly –  the Rachmaninoff Second Piano Concerto a few months later, I lost touch with him. Some thirty years later I met a young man who was studying accompanying with Sam at Juilliard, so he’d have been in his early forties at that time. His student also told me Sanders had opted to work professionally as an accompanist rather than pursuing a career as a virtuoso pianist. I was very glad to hear he had survived past the age of thirty and was still sharing his extraordinary gift.

I thought of him again when I watched the HBO film “Something the Lord Made” (highly recommended) and wondered how he was. Internet searches revealed that he had died at the age of sixty-two. He’d had the B-T procedure when he was nine and two additional surgeries (the total correction and a heart valve replacement), and eventually not one but two heart transplants. The second one failed, sadly. While not a household name, he had a long and illustrious career as a collaborative pianist and performed with some great musicians who definitely ARE household names. I list a few of his many recordings in the discography at the end of the book.

As a teacher at both Juilliard and Peabody, and playing with many artists, Sanders had a grueling schedule for most of his adult life. I read somewhere that he played as many as 100 concerts a year. My thought is that schedule may have been what kept him going for so long. He refused to give in to his heart condition. His dedication to music made a huge difference in his case. From some of the blogs I’ve read by contemporary adult TOF patients, it seems the determination to live to the fullest despite their condition is what helps them not only survive, but thrive. I’ve also read indications of the difficulties of living with the disease: fear and anger, depression and despair, yet a great feeling of joy with every accomplishment. The human spirit is absolutely amazing. These are courageous people.

My book is fiction, and my character Eli Levin is the product of my imagination. I did not know Sam Sanders beyond that brief friendship when we were both little more than children. However, his passion for music certainly had a lasting impact on me; he was indeed an extraordinarily gifted pianist and musician. We don’t meet many musical prodigies in our lifetime, and if and when we do, we never forget them. The fact that this one also had a damaged heart made him even more unforgettable.

In the Afterword in my book I tell the reader about Sanders, and comment “What would it have been to have these two burdens, a damaged heart and a prodigious musical gift? What would it have been to share that person’s life? Hence: Eli’s Heart.”

ELI'S HEART, a novel

ELI’S HEART, A Novel

Yes, my blogs are going to be about the new book for a while. This one will be brief. The book is now in production and should be announced for sale very soon, hopefully within two weeks. It will be available on Amazon as a paperback and an e-book. I decided to go with CreateSpace, and thus far it has been a very good experience. I have to say I am glad that I’ve had experience using my computer in a much different way than most people do; digital notesetting and using a DTP program, Quark Xpress, I’m sure have been a great help in formatting the book interior myself.

Here are the basic information on the book that will appear on the back cover, and the picture of the front cover. Two very savvy and talented young men, Taylor and Tristan Flanagan, came up with the cover concept and then realized it. Taylor had the idea, Tristan took the photograph and added the title and author name. Anybody want to guess to whom those gifted hands belong?

I am very happy with the book. I hope some people will buy it; even more I hope some people will read it. Watch for giveaways and sales! One of the reasons I decided to print it with CreateSpace this time. Those of us who self-publish are also known as “indie authors.” I like that. I like that I own the copyright and have complete control of this book. Of course, there are millions of book in the vast “Amazon” book jungle; more every day. But for me it is a delight to actually see my work in print. I’m thankful I’m not trying to pay my bills this way, however.

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“Once upon a time, there was a beautiful boy

 who was born with two things:

a damaged heart and a heart full of music.”

─ Krissy Levin

       

          In the nineteen fifties, ELI LEVIN, a brilliant teenage pianist born with a serious heart defect and not expected to live past the age of thirty, meets KRISSY PORTER on a visit to a small town in the Southeast.         

        They play piano duets, talk about baseball, eat banana splits. A budding romance is ended by interference from Eli’s family, but they find their way back to each other three years later.

        They marry on Krissy’s twentieth birthday while they are both college students. The music they share is a vital part of their life together. Once he begins his career, Eli’s rise in the music world is meteoric.

             Although they are devoted—and intensely passionate—from the beginning, the couple must struggle with never knowing when the various repairs to Eli’s heart might give out.